living with epilepsy - a flashy lifestyle for a photosensitive girl Watch

mpaprika
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#41
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#41
(Original post by The_Lonely_Goatherd)
Did you have a good bday mpaprika ? Or is that tomorrow? I can't count... :getmecoat:
Tomorrow! But thank you for remembering, it means a lot to me I actually had a lovely pre birthday celebration with my family abroad since I’m leaving tomorrow xx
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The_Lonely_Goatherd
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#42
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#42
(Original post by mpaprika)
Tomorrow! But thank you for remembering, it means a lot to me I actually had a lovely pre birthday celebration with my family abroad since I’m leaving tomorrow xx
Ah that's great you had a lovely time, so pleased to hear that. A very happy bday for tomorrow, and all the best for the year ahead :penguinhug:
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ecolier
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#43
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#43
(Original post by mpaprika)
...I got the blood work back in 3 hours and I have an increased number of monocytes ecolier why could this be? I had 14.2% whilst the average is from 10-12%
:dontknow: It can be due to many different things (e.g. infection). I am sure your doctors will keep monitoring that.

:birthday: btw :party: :yay:
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The_Lonely_Goatherd
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#44
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#44
HAPPY BIRTHDAAAAAAAAAAAAAAAAAAAAAY! :ahee: :king1: :woo: :party: :danceboy: :macarena: :cool: :awesome: :yay: :nutcase:
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mpaprika
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#45
Report Thread starter 2 months ago
#45
(Original post by The_Lonely_Goatherd)
HAPPY BIRTHDAAAAAAAAAAAAAAAAAAAAAY! :ahee: :king1: :woo: :party: :danceboy: :macarena: :cool: :awesome: :yay: :nutcase:
AWH thank you!! This is so sweet of you!!
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mpaprika
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#46
Report Thread starter 2 months ago
#46
(Original post by ecolier)
:dontknow: It can be due to many different things (e.g. infection). I am sure your doctors will keep monitoring that.

:birthday: btw :party: :yay:
Heard it could also be caused by stress, is this true?
Thank you!!! Means a lot x
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ecolier
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#47
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#47
(Original post by mpaprika)
Heard it could also be caused by stress, is this true?
Thank you!!! Means a lot x
Potentially! Don't want to worry you on your big day. Enjoy :yy:
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Obolinda
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#48
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#48
Happy birthday 😁
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mpaprika
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#49
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#49
(Original post by Obolinda)
Happy birthday 😁
thanks so much! xx
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mpaprika
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#50
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#50
Hi all! I know I've been a bit terrible with updating this, but I've been quite busy and mostly outside since it's actually sunny in the UK :eek3: (god that emoji isn't good for me lmao) Read my previous post about the problem with drug change before this

Anyway, I went to my neurologist on the 19th of August, my mum wanted a general check up and wanted another EEG :cry:however the Dr said that maybe in a years time I'll have to repeat all my tests (MRI, CT & EEG) just to see the changes. It had also been decided, that I have to keep taking sodium valproate :cry2: for another 2 years (!!) so I will be having to take pregnancy tests every month (how. fun.). I actually cried in her office because I really don't want to, especially since it will take so much time once I'm in year 12. In conclusion, this was not fun.

She also did a few motor reflex tests and apparently I had delayed response (I'm sorry wHAT) - what does this even mean?? I'm hoping it's because I was wearing thick clothes and she did it too lightly as when I took my socks off I had faster reflexes. All the other tests went fine. The neurologist was actually so lovely, my 3 year old cousin who suffered also has her as a doctor and my aunt recommended her. She even said ''here's my email @ if the future doctor has any questions'' ( she got very excited when I said I want to be a surgeon)

She recommended I have more blood work taken and that I start taking L-Karnatine for my slowed down metabolism (this was actually a pro of the visit), which means I can get back to myself. I now take 500mg of L-Karnatine, 500mg of D3 and 800mg of Sodium Valproate everyday.

The blood work all went fine, I also had a liver function test since they don't offer them in the UK and my % conc of sodium valproate was in the correct range (73%). My mum also ordered general bloodwork in advance and it was all fine except my monocytes which were at 14.2% (the normal range is 10-12%) which worried me a lot. I'm still really worried.

My next appointment is the 5th of September. Results day also went very well with 13A*s and 2As, so I'm really proud of myself regardless of all I've been through this exam season!

Dazzling people:
Last edited by mpaprika; 2 months ago
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The_Lonely_Goatherd
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#51
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#51
You did 15 GCSEs?! Holy **** :eek3: I thought my doing 10 was exhausting enough, lol. Well done on those stellar results! :king1:

Sorry to hear you have to stay on the sodium valproate though

Big hugs! :hugs:
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mpaprika
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#52
Report Thread starter 2 months ago
#52
(Original post by The_Lonely_Goatherd)
You did 15 GCSEs?! Holy **** :eek3: I thought my doing 10 was exhausting enough, lol. Well done on those stellar results! :king1:

Sorry to hear you have to stay on the sodium valproate though

Big hugs! :hugs:
yeah I wouldn't recommend doing 15 to anyone at all :laugh: also thank you!
I'm a bit upset about it but I'm trying to think of the positives regarding sodium valproate, and that it's a really good AED and I haven't suffered any seizures on it. :hugs:
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ecolier
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#53
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#53
(Original post by The_Lonely_Goatherd)
You did 15 GCSEs?! Holy **** I thought my doing 10 was exhausting enough, lol. Well done on those stellar results! ...
Agreed. It's super amazing that OP did 15 GCSEs!

(Original post by mpaprika)
...I'm a bit upset about it but I'm trying to think of the positives regarding sodium valproate, and that it's a really good AED and I haven't suffered any seizures on it....
Exactly. If it wasn't that OP is female valproate would probably be prescribed for life - it's actually a really good drug for seizures (first line for many types and is not contraindicated in any type according to NICE guidelines). Just a shame that it is so teratogenic.
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mpaprika
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#54
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#54
(Original post by ecolier)
Agreed. It's super amazing that OP did 15 GCSEs!

Exactly. If it wasn't that OP is female valproate would probably be prescribed for life - it's actually a really good drug for seizures (first line for many types and is not contraindicated in any type according to NICE guidelines). Just a shame that it is so teratogenic.
hey! sorry for the *extremely* late reply, but I was so so busy with sixth form I forgot about this blog SV was first line for me and I took it the day of my grand Mal seizure after being hospitalised, it has proven to be extremely effective although I think I'm starting to get some symptoms now after 5 months of treatment?
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ecolier
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#55
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#55
(Original post by mpaprika)
hey! sorry for the *extremely* late reply, but I was so so busy with sixth form I forgot about this blog SV was first line for me and I took it the day of my grand Mal seizure after being hospitalised, it has proven to be extremely effective although I think I'm starting to get some symptoms now after 5 months of treatment?
Oh no! I hope you have told your neurologist this.
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mpaprika
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#56
Report Thread starter 1 month ago
#56
(Original post by ecolier)
Oh no! I hope you have told your neurologist this.
I have an appointment in January
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ecolier
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#57
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#57
(Original post by mpaprika)
I have an appointment in January
:eek:
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mpaprika
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#58
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#58
(Original post by ecolier)
:eek:
I've been waiting since June as well oops
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ecolier
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#59
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#59
(Original post by mpaprika)
I've been waiting since June as well oops
Not that surprised tbh. We are seeing patients more than a year after we said to them we'll see in 3 months.

There's literally thousands of patients waiting for neuro outpatients nationwide. We're desperately short of neurology consultants.
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mpaprika
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#60
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#60
It's been a hot second! I don't have much time to type this, but I'm not doing well. I have so much school work and every night I go to bed at midnight and wake up early in the morning, which is possibly triggering for my epilepsy as last time. My mental health isn't good either. I think my medication is making me depressed, or maybe a-levels. Or a mixture of both. My hair isn't falling out in huge clumps anymore which is good (touch wood omg) because the amount that I was losing everyday was concerning.

This school term I will try and be more focused and organised - maybe yoga in the morning?? (lol as if) I already do ballet x3 a week so that balances everything out well. I also need to stop crying all the time (see above - what if happening???) I also think I may have accidentally overdosed on my medication this morning by taking 2 500mgs (oops). My neurologist said I could possibly have liver problems if I took too much, but that must be often.

My blood work will be in soon which is good because I'm being panicky about a lymph node. In general, I haven't been doing well, although I did dress up as Tokyo from money heist for a halloween party on Wednesday and I rocked it :cool:

here's to another post comrades

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